The budget crisis affecting California has resulted in savage cuts to many programs: cuts which have already and will continue to result in serious harm to real people. Every day brings word of what would have been unthinkable only a few years ago: cuts in SSI, decimation of in-home support services, the near closure of and serious budget cuts to the Frances Blend School, and on and on. See Winifred Downing's article on the stresses of such cut-backs on the life of a San Francisco teacher of the visually-impaired.
All over the country state and local governments are fighting their budget battles on the backs of people with disabilities, the poor and the vulnerable.
CCB continues its valiant efforts to represent our interests and concerns before state government, but it sometimes seems as if no organizations and no existing strategies can resist the tide. What lessons emerge from this dire situation and what strategies are available to us in this era when our nation is abandoning its commitments to an equal, fair and humane society? These are questions we must address as a community if we are to preserve our hard-won steps toward equality in the difficult years to come.
The first lesson to be drawn is that we can never be complacent. None of our rights or opportunities are secure or invulnerable. For instance, a few years ago here in California, we thought we had won the right for blind parents to take their newborn home from the hospital without some agency stepping in and taking the child for no other reason than that the parents were blind. But no: recently a couple in Missouri had to fight the battle in court all over again.
People with disabilities are the last in and the first out, so far as funding, civil rights or any serious attention are concerned. And we do not have enough votes to make a difference, no matter how well organized and how focused we are.
That gives rise to the second lesson. New and broader coalitions and new forms of advocacy are going to be necessary for our agenda and legitimate concerns to have a place at the table. Our representatives in Sacramento cannot do it alone. Everyone of us, in our communities, must begin to think and work toward forging and energizing new grass-roots coalitions embracing people with disabilities, senior citizens and other marginalized and vulnerable groups. Everyone of us must begin to think of new ways to make the issues palpable and meaningful to those in the mainstream community: (our neighbors, colleagues, families, friends), the media and public officials.
In the weeks and months to come, we must all create dialogs about how our goals can be achieved. The stakes are immeasurably high and the time is short, but our community, in itself and as the spearhead for the activism of others, has achieved great things in the past and we can again in the future. Let this adversity bring out the best in us.
2010 ACB Convention Report, Part One
By Donna Pomerantz and Jeff Thom
It's almost an impossible task to bring to the dry pages of this report the dynamic, wild, incredible, fulfilling time most of us have when attending an ACB National Convention, and yet that's exactly what we are presented with in compiling these reports. Judging by the reactions of some of the Californians who were first--timers at this convention in Phoenix, or those who hadn't been to a national convention in a long time, they could likely write an article engendering that feeling far better than we can, but we'll do our best. Our report will focus on the General sessions, but we would be remiss if we didn't mention the outstanding tours, including the Grand Canyon tour, and the super special-interest sessions that occur throughout the week and the ACB walk on Saturday in which several of you walked and many more of you generously contributed. If you can make it to Reno next summer for the 50th ACB Convention, a golden moment indeed, that convention will also be chalked full of this type of experience.
The 49th annual ACB Sunday night opening session was full of information and nice surprises. After our invocation, Pledge of Allegiance and National Anthem, we had warm welcome greetings from Marchelle Franklin, Deputy Chief of Staff, Office of the Mayor, of Phoenix, the fifth largest city in the United States.
We were also welcomed by the Arizona Council of the Blind's President Ron Brooks and immediate past President Barbara McDonald. We then heard some highlights of the past year from President Pomerantz. He discussed the thinking of the Board for proposing the constitutional amendment to change the name to "The ACB Conference and Convention". There is a need for the change to attract sponsors and other professionals. Later in the convention, that change was adopted by the membership.
Approaching the final months of the first decade of the 21st century, he spoke of some of the challenges we who are blind are facing. In education we are experiencing a low rate of braille literacy among children who are blind as well as a shortage of braille teachers, the closure of teacher preparation programs as well as schools for people who are blind. He further talked about the taskforce on schools for the blind chaired by Ray Campbell and the work it has done. Also rehabilitation and employment issues are of great concern. He mentioned that the ongoing economic crisis in states has been the justification for a nationwide movement to consolidate programs that has the potential to seriously damage programs serving blind and low vision consumers. ACB has been working closely with the Randolph Sheppard Vendors of America to ensure that vending facility programs are not harmed, so that we can keep opportunities open for blind and visually-impaired people.
President Pomerantz also mentioned that ACB has been working with the National Industries for the Blind in support of their employment programs that provide work for thousands of blind and low vision Americans. He noted that transportation is suffering as well. Some cities have eliminated non-peak hour service and when buses don't run neither does paratransit. On a more positive note, the president discussed ACB's efforts to get HR 734 and S 841 (quiet car legislation) passed. It looks as if we will be successful in having this legislation enacted. President Pomerantz also discussed HR 3101, our telecommunications bill, the great testimony given by CCB member Jesse Acosta, the challenges we must overcome to get this passed with the necessary components in the bill. The president then mentioned that the structured negotiation work ACB has done with Lainey Feingold and Linda Dardarian continues to make steady progress in furthering barrier removal regarding website accessibility and point of sale machines. He also mentioned ACB's Social Security Administration litigation victory, thanking the Disability Rights and Education Defense Fund for their fine work. Now, SSA must provide us with letters of information in braille and CD; SSA also has indicated their willingness to provide information in large print and cassette.
He discussed ACB's concerns regarding the document presented by the consultant for the Department of the Treasury in our successful accessible currency case and noted that ACB will be submitting comments to the department.
Before turning to internal ACB matters, he also mentioned that the ACB Audio Description Project has submitted grant applications and is hoping for big things in the year to come.
Two internal challenges are fundraising and membership recruitment. In May, a three-minute interview was aired on SKY RADIO carried by the business and technology channel on 29,000 American Airlines flights as well as a 30 second announcement on the CNN airport network at nearly 50 airports around the country. ACB is also in the process of establishing its presence on Facebook and Twitter. President Pomerantz concluded by stating that we must all join in and support the legal, legislative and advocacy initiatives of ACB so we can continue to keep our programs and services and support the memory and work of our founders.
Next on the program was Daniel Goldstein, attorney for the Reading Rights Coalition which is comprised of approximately 30 organizations. He spoke of the case against Arizona State University regarding access to E-Books and the Kindle. At the beginning of 2010, there were 350,000 Kindle books and that now has doubled. In contrast, the National Library Services is able to add 2,000 accessible books a year. We must have mainstream access because that is where the real action is. Despite the great things that NLS and other entities serving our population have done, we will be left far behind if we don't have access to mainstream book providers. In 2007 the first Kindle was released and the menus did not speak and it had no text-to-speech component. In Feb. 2009, the Kindle II was released with text-to-speech. However the Authors Guild and publishers were furious and said they did not agree to this so Amazon agreed it would turn off the text-to-speech at the request of a publisher. For this reason, the Reading Rights Coalition was formed. By March of 2010, most publishers and the Authors Guild agreed that whenever any book is available in other than print that version of the book must be accessible. Not all publishers are keeping the text-to-speech on the Kindle. In April 2009 the Kindle DX was released and it was announced that 6 colleges, including Arizona State University, were commencing a pilot project using the Kindle DX. Thus, ACB and NFB agreed to join together in a lawsuit against Arizona State and complaints by the federal government were filed against the other five institutions. Now all of the complaints have been resolved, and the schools will not use any inaccessible device for e-books. The United States Departments of Education and Justice released a letter to all colleges and universities stating that the use of inaccessible reading devices is a violation of law and they cannot do it. ACB and NFB also sent equivalent letters as well. Adobe Digital Additions is also inaccessible, and we must work to win that battle as well.
The Reading Rights Coalition however was successful in getting the American Library Association to adopt a resolution that states libraries should not purchase and lend out inaccessible e-books. Also the Los Angeles Public Library announced that they would not purchase Adobe Digital Editions and would not do so until they make it accessible. Adobe did say they would have an accessible version the beginning of 2011 and that the default would be that text-to-speech will be turned on. Supposedly there will be an accessible Kindall in August or September but time will tell. In three to five years, there will be no print books: all will be digital. The content of those books will be very complex in that there will be video, hyperlinks, interactive tests etc. The challenge for the Reading Rights Coalition will be to make sure that students who are blind will not be left behind. CoreSmart, a leading company in e-books did not start out in supporting accessibility. They now have had a change of heart with some urging, and in fall 2010, CoreSmart books will work with the Mac and by January 2011, with PC's.
The Daisy Consortium is working to make standards and show others how to make digital instructional materials. We also need the US Department of Education to put in the grants they award that all digital content must be accessible as a braille file and by screen reading technology. The goal of the Reading Rights Coalition is to ensure that everyone will have any book at the same time for the same price as sighted readers do.
Unfortunately the gentleman from Major League Baseball was not able to attend. We have however received outstanding cooperation from baseball's website
mlb.com
pursuant to structured negotiations.
We then heard a report from Carol Ann Ewing-Ragsdale, Chair, DKM First-Timers' Committee. She introduced the awardees from Texas and North Carolina. Both gentlemen have been very active in their states. We went to the presentation of Life Membership to ACB by President Pomerantz. New life members included a familiar face to many of us, former Californian and longtime Hawaiian, Don Thompson.
Next was the Credentials Report by Chair Jean Mann. Four affiliates were contacted because of late rosters and dues, and One of them had a vote taken away. The night ended with a lively Roll Call of Affiliates by Marlaina Lieberg, ACB Secretary.
After a few brief business items, including introductions of some of our sponsors and a final Credentials Committee report, Monday morning's session began with First Vice President, Kim Charlson, presiding. Cindy Van Winkle, Awards Committee chair, presented a membership award to the South Dakota Council of the Blind, which had an 81.8% membership increase. Paul Edwards, Publications Committee chair, gave awards to ACB of Texas for its White Cane public service announcement. He next awarded June Horst, of the Pennsylvania Council of the Blind, an award for their newsletter. Finally, the last award went to Lisa Brooks for her fine Braille Forum article, "How Forgiveness Got Me A Job."
Alice Duckworth, Outreach Coordinator, Arizona Capitol Museum, presented a fascinating address on the Treasures of Arizona. As early as the 1850's, before there was an Arizona Territory, copper was being shipped to Wales. She talked about some of the strange mysteries and natural beauty of Arizona. The Grand Canyon and the mountain ranges have a stark beauty. But although copper is king in Arizona, it's the three rivers near Phoenix that are the treasure for that region. The real treasure, however, is the people.
One of the highlights of the convention was the address from our international speaker Kerryann Ifill, Deputy President of the Senate in Barbados and Secretary of the Caribbean Council of the Blind. Her small island nation is said to have 13,000 persons with disabilities, but that may be a low estimate. They do, however, have a high diabetes rate, but a good health care system. She described their governance system, which is modeled after the British system. Politically, the Caribbean is fairly stable. One study said that the blind equaled 1% of the Barbados population and the low vision population was 3%. Although there is an education program for blind and low vision children, very few are in school, and this is true of many Caribbean nations. Services are poor and often unavailable.
Even insufficient advocacy is a problem. The Caribbean Council of the Blind is mainly in the English and French areas, and not the Spanish-speaking nations. The council does have some good programs. Barbados has a government Department of Disabilities and disability organizations, as well as the Barbados Association of the Blind and Deaf, established in 1957. It has a sheltered workshop and a rehabilitation program. They have only their second blind president and hopefully that trend will continue. They do have a school under the Association's auspices, but it doesn't provide secondary education. There is also the United Society for the Blind that is mainly comprised of blind people.
She loves the Barbados Blind Cricket Association, and there are teams from other Caribbean nations as well. It's done a great deal for blind folks because many sighted cricketers are very excited about it. She works for a computer services program for the blind, which is a government program in the Department of Disabilities. She wants to teach the world that blind people can adapt if their needs are met.
The next speaker was California's own Kathy Martinez, Assistant Secretary, Office of Disability Policy, and U.S.
Department of Labor. Kathy emphasized that in the Obama Administration, people with disabilities are a full partner and are at the table with everyone else. She realizes we need to make all Department of Labor processes as accessible as possible to ensure good employment outcomes, but that they have come a long way. She said that the department was going to be engaging in a rule-making proposal under which they'd be soliciting comments on enhancing its disability affirmative action statutes. Federal contractors make up more than 20% of the workforce, and we need to get our share of that pie. ACB must focus, she thinks, on the questions the department will pose in the rule-making proposal on how to make all information accessible to us. We need to provide data on best practices to the department.
She described the Add US IN initiative to help enlarge the numbers of minority businesses that recruit persons with disabilities. Just because most of these small businesses don't need to comply with the ADA doesn't mean they shouldn't hire us. This will be a grant program under which consortiums will receive funding. Her office is working with NIB and NIH to increase choice by providing best practice information to them that will promote employment choice. She talked of the department's cosponsoring of the April 26 hiring event for persons with disabilities. So far almost 100 offers have been made, and although this isn't great, it's a major step forward. They would like to try these job expos regionally. She also mentioned SPA's developed in their Campaign for Employees with Disabilities. They can be downloaded from their website. She also mentioned their work on the aging in place campaign for employment of seniors with disabilities. She also discussed the need for development of better youth transition programs, and specifically a curriculum for soft skills that employers demand for persons with and without disabilities since they will be working together.
Finally, Kathy mentioned an issue that we in CCB have been trying to work on. Her office held a meeting in Hollywood a few days before her address on employment of persons with disabilities in all areas of the entertainment industry.
Kathy's remarks were followed by a panel on rehabilitation, with various professionals. The first speaker was Michael Gandy from Mississippi. He has embraced the consumer groups, joined both, met with them both many times on policy matters, and in his view, it greatly helps communication with him and his staff. He also knows how important those groups are to ensuring that his program does not go away. Finally, the consumer groups work more closely when this communication exists. He mentioned their partnership with Subway and x Dunkin' Donuts and the positive impact on their Randolph-Sheppard program.
Patrick Cannon, from Michigan, mentioned that they were using federal stimulus funds to create public and private sector internships, both part and full-time, for blind and low vision persons. These internships help consumers develop hard and soft skills that they need. These internships also give supervisory staff the knowledge that blind people can do the job.
Linda Mock talked about their commission structure, a majority of the membership must be blind, and that she is thrilled with that structure. She talked about how, when the Governor announced that the commission was going to be eliminated, she found out through a blind consumer who warned her and then she and others mobilized to stop the effort. Commission consumers, including NFB and ACB, did a great job to thwart the governor's initiative. In fact, the legislature was receiving so many calls that they wanted her to stop bothering them because the governor, not they, was causing the problem and urging her commission to be abolish. She said "I can't stop the consumers from complaining."
Greg Trapp, from New Mexico, praised the cooperation of NFB and ACB in fighting an effort to end their Commission for the Blind. New Mexico is trying to institute policy recommendations on warning drivers of hybrid cars about their dangers. New Mexico also has a "technology for children" program, and they think that will end if their commission goes away.
Ed House from Arizona, concluded by talking about the potential for funding gaps to worsen as stimulus funding dries up. Advocacy will be more important than ever under this circumstance. He mentioned contracting with private provider entities who can match additional funding. He talked about consortium programs, such as the Marine contract that Arizona and California are entering into: how hard these are to form, but how it may become very necessary to maintain programs.
Finally, Oral Miller discussed the schedule for the ACB Recreation Zone, a part of every ACB convention, where games and exercise events can entertain you and make you healthy as well.
Tuesday's session began with a report of the Nominating Committee, presented by Judi Cannon, Chair. Nominees for the board of directors were: Ray Campbell IL, Jeff Thom CA, Allan Peterson ND, George Holliday PA, Janelle Edward, Mo. For the Board of Publications, nominees were Marsha Dresser MA, Judy Jackson TX, Ken Stewart Ny.
Then John Huffman, acting chair of the Constitution and Bylaws Committee, gave a first reading of some of the proposed amendments to the ACB Constitution.
Eric Bridges, Director of Advocacy and Governmental Affairs, gave a report stating that in two days from this session the Senate Congress Committee is going to takeup S. 3304 the Senate's version of our Equal Access to 21st Century Communications Act. We don't want them to remove several provisions that were recently removed from the House version: including the deaf-blind provisions and the prohibition on video description and the FCC's authority to re-enact the prior video description requirements for television networks and potentially expand them in the future. He stated that we need to keep the bill as strong as it was previously, and he would let us know if we needed to make calls during convention.
Tuesday's presiding officer was Second Vice President, Brenda Dillon. Following Eric, Lainey Feingold reported on ACB's ongoing Structured Negotiations efforts. "Structured Negotiations Depends on Me," was her theme. She and Linda Dardarian have worked with ACB for 15 years starting with us in CCB. They are now working with other states as well. There are now 10's of thousands of accessible point of sale keypads where there were none before. She also reported on our work for the installation of talking ATM's,
which started in 1995. There are close to 100,000 talking ATM's all over, and this effort started through the work with us in CCB. Accessible pedestrian signals were discussed, specifically the San Francisco settlement. She also reported on accessible financial information, specifically accessible credit reports and banking information. Accessible Health Care Information is a new area Linda and Lainey are working on for us. We have the right to have confidential and private access to our information, and we must demand equal access. We are currently working with the American Cancer Society and hope to have more to say about this later in the year. Also work is being done on the use of talking pill bottles in order to obtain access to prescription information.
Lainey also reported on a marvelous "audio" victory that occurred due to the efforts of the Arizona Attorney General's office and others, in which audio description equipment in movie theaters was held as generally required under the ADA. She also mentioned that accessibility to airline kiosks is another area that is being worked on. She concluded that it is up to all of us to continue making sure that our structured negotiations are being implemented, and if they aren't then it is up to us to let her or Linda know.
Patty Slaby, ACB Scholarship Committee Chair, introduced our scholarship winners. She announced that Kurzweil Education Systems awards all ACB winners a Kurzweil 1000 software package to help with their education. We are proud to say that the Floyd Qualls scholarship went to a Californian who is attending Cal State University Los Angeles. Her presentation ended with recognition of the Council of Citizens With Low Vision International scholarship winners. Our own Dr. Catherine Schmitt Whitaker from Diamond Bar chairs the CCLVI scholarship committee.
Next we had an extremely interesting address from Sam Bagenstos, Principal Deputy Assistant Attorney General for Civil Rights, U.S. Department of Justice. He gave us an assessment of the ADA on its 20th anniversary. He talked about his priorities for people with disabilities, one being full and equal access to technology. His office is dedicated to supporting the work being done regarding accessibility to the Kindle. He also informed us that the Department of Justice has taken a position that goods and services provided over the internet are covered under Title III of the ADA. They are pushing very hard to extend their regulatory authority; they want to work with businesses to provide technical assistance in making environments accessible, but if those businesses don't want the technical assistance, then the department will sue. His office has a very active complaints unit that deals with hundreds and hundreds of complaints every year. They are building trust in the community, and they wish they could have more resources to deal with everything that comes to them. They feel that they are doing better, and they want us to reach out to them and let them know the issues impacting us. Also he mentioned that the Department of Justice has an ADA hotline number which is 1-800-514-0301.
Our next speakers were Frank Kurt Cylke, Director, National Library Service and NLS Foreign Language Librarian, David Fernandez-Barrial. There are, Kurt Cylke told us, already 200,000 of the new machines that should be in the possession of readers. They also have approximately 20,000 books on the BARD site and are regularly adding titles.
David Fernandez-Barrial has been with NLS for a year now. He informed us that one thing they have done to expand the foreign language library includes adding a number of Spanish-language titles. The top languages in the NLS collection are Spanish, French, Ukrainian, German and Russian. They put a survey together and sent it to the libraries and received responses from all but 7 states. They are also working with field offices all over the world.
Regarding direct BARD technical support, you can only contact them by email for assistance.
The session ended with an update on ACB's Audio Description Project, given by Joel Snyder, President, Audio Description Associates and Director, ACB Audio Description Project. Snyder informed us that the project was established in January 2009. He told us that this year, the second audio description conference is being held in conjunction with the ACB Convention. There were also 11 countries represented attending "virtually". The project is currently doing a final evaluation of national standards for audio description. They are also reviewing how much people who are blind are involved in every aspect of audio description from voicing description to producing description. The project is working in conjunction with Art Education for the Blind of New York and are actively planning an audio described tour of the White House. This project has also been working actively on the passage of HR 3101 and its Senate companion. He said that there is much more going on, but he would close by letting us know that they have a presence on Facebook where you can become a fan. Go to
www.acb.org/adp
to find a list of DVD's that have audio description, and if you buy them from Amazon through the ADP, the project benefits. You can also find out more of what is going on with this project when you visit the website.
"Tune in" to the next BC for the exciting conclusion of this report.
Helen Keller National Center For Deaf-Blind Youth and Adults Senior Program, April 12-20, 2010
By Donna Sanchez
About a year ago, Cathy Kirscher, a regional officer from the Helen Keller National Center For Deaf-Blind Youth and Adults, spoke to us at the Santa Clara Valley Blind Center about the center and its Confident Living program for seniors. Four of us from the center were chosen to attend the 2010 session. HKNC's mission is to enable each person who is deaf-blind to live and work in his-her community of choice.
Rose Deterding, Naomi Grubb, Shirley Lantz and I left from San Jose Airport on American Airlines and almost missed our connecting flight in Los Angeles: what a beginning! During the flight we talked and ate the peanut butter and jelly sandwiches we had brought; the airline staff was very helpful. At JFK, representatives Paige, Sarah and Phil, picked us up and took us to the Center, located in Sands Point New York on Long Island, about an hour's drive, where a dinner of meatloaf, mashed potatoes and green beans awaited us. Located in the basement of the wonderful residence building, our rooms, each with two beds dressers, desks and closets (some with two sinks), were nice and clean.
Every day, breakfast was served at 7:30 AM and classes started at 8:45. The first day at breakfast we met the other four students: Derek Baum from Chico, Cindy Flerman from Los Angeles, David Hanlon from San Diego, and Roy Harmon from Oceanside CA as well as their wives. All eight of us were compatible and really enjoyed each other. The group enabled us to share and be free with our feelings regarding our vision and hearing losses. Some of us belong to the CCB. Paige Berry' Program Coordinator Senior Adult Program HKNC and Lisa Honan, Coordinator, Mental Health Services, HKNC facilitated the Senior Program for the week. We also had four wonderful volunteers, Support Service Provider SSP's (from Virginia) who treated us like royalty.
In one activity, a support group, we told our stories, which was very interesting and enjoyable because I could relate and identify with things the others said which made me feel I am not the only one with similar experiences. Classes and speakers also included the following. Audiologist, HKNC Carol Hamer, spoke about different types of hearing aids and how we should go to our audiologist every five years since changes in hearing could occur. In class we used the William's Sound FM Listening System, consisting of a microphone, which we passed around, and headsets for everyone so we could all hear. One recommendation was that when hearing-impaired people go to restaurants, they should request a table near the wall, preferably in a corner, or even better, a booth with a high back. If people have problems hearing, they can print upper case letters on each other's palm (called Print on Palm).
Classes were held in the administration building, located across from the residence building. Between these buildings was a track to walk around with railings, and there were beautiful trees with pink and white gorgeous blossoms.
Dr. Marc Epste, optometrist, O.D., F.A.A.O., spoke about our vision loss. He discussed macular degeneration, glaucoma, retinitis pigmentosa, Usher Syndrome and cataracts. He was down to earth and answered any questions we had. (He also liked to tell jokes.) Sister Bernie Wynne, Coordinator, National Training Team HKNC, gave tips on public speaking to help us spread the news about the Center. In fact, Rose, Naomi, Shirley and I are going to give a talk to the Santa Clara Valley Blind Center, and I hope this article will help educate many deaf-blind individuals about the Center.
With Monica Godfrey, Supervisor Orientation and Mobility, we discussed this topic. One suggestion was that we all get some mobility training in our community. Deanna Eble, Attorney from Vincent J. Russo and Associates in Westbury, NY, discussed elder law issues. We found out that if we had a trust made eleven years ago, it is still good but, you can update at any time. You should put health directives and the power of attorney documents at home in a firebox, not a deposit box because you might not have access to that when you need those documents in an emergency. Since wills and trusts would be needed only after your death, these could be kept in a deposit box if desired.
Each student had opportunities to attend individual classes lasting forty-five minutes concerning adaptive technology, computers, creative arts, independent living and communications. Valerie Chamela, Senior Instructor, Communication Department HKNC, discussed emergency preparedness. She showed us a plastic shopping bag with items such as flashlight, whistle, radio, shoes, sweatshirt, medication, and extra cane. You would take this emergency bag if necessary to evacuate your home immediately; the suggestion was to put such a bag in several rooms of your home. Another suggestion was to notify your local fire department of your disabilities. The Centers for Disease Control and Prevention (COULDC) and HKNC are conducting a research study on Congenital Rubella Syndrome (CRS); this study will look for markers in blood to see if there is any difference between adults born with CRS and adults who had German measles. The study will look at different markers to the rubella virus that may help health care workers find the cause of people's handicaps. I was asked to store my blood sample for future research on Rubella Syndrome because when my Mom was pregnant with me, she had German measles so I am a Rubella baby. I was very pleased and happy to do this.
Some of the recreational activities we participated in were a pizza party, music jamboree, bingo, food brought in from a barbecue restaurant for dinner, shopping at the mall, lunch at an Italian restaurant before we went to a musical comedy called "Midlife Crisis". The Friends of Helen Keller funded the restaurant and play. During some of the evenings we played card games, dominoes, or just socialized.
The last morning, we listened to speeches by several of the students staying at the center concerning their adjustments, stories and their future plans. We had no mishaps on the way home; we slept, listened to music, and ate yet more peanut butter sandwiches, made by the Center.
The week was very enjoyable and educational. I am very glad we all had a chance to go to the Helen Keller National Center and participate in the Senior Program.
Interview with Anita Aaron
by Steven Mendelsohn
If you've been around the blindness community for any time at all, you've probably met Anita Aaron. For two decades she was the Executive Director of the San Francisco LightHouse; before that she worked in various community-based organizations serving the disabled, including the World Institute on Disability, where she has returned as of February 1, as its Executive Director. At her inspiring banquet speech during the CCB spring convention, she reminded us of what teamwork can accomplish. She has always known that the people know best. Clients, consumers, whatever term you care to use: those who as she said, "walk the walk and talk the talk" are your best resource. Here is her interview. Enjoy!
What do I think my major contribution was to the lighthouse over the 20 years I was there?
Two words come to mind: Involvement and Tone.
It was of critical importance to me that blind and visually impaired people be involved in the business of the LightHouse at all levels and in all aspects of our work: from membership on the Board of Directors, to employees including the management of the organization, to our advocacy work in the community and the services we provide.
I wanted the tone of the organization to be one of equality and openness--the LightHouse is the place where being blind or visually impaired is the norm; not the exception. And, blind people know more about what they need than people who are not blind.
We addressed both these elements in many ways over twenty years. Beginning in the early 1990's, we made sure the LightHouse board was built on one-third to one-half members with visual impairments: not because the law or our bylaws required it of us or because funding sources granted extra points for token involvement, but because we believed consumer input and knowledge made the LightHouse a stronger, richer more relevant organization. We cared about employing individuals with vision loss at all levels and in all programs and in involving consumers of services in how those services would be provided. We believed in working in partnership with the California Council of the Blind and the National Federation of the Blind and in opening our doors to host chapter meetings and other related activities.
I'm proud of how the LightHouse expanded services to Marin and the North Coast and of how Enchanted Hills Camp became the spot where many blind people gained their first real work experience as counselors, groundskeepers and kitchen staff. I'' proud of our work with the community on public transit systems that announce the transit stops, produce schedule and route information in accessible formats and consider travelers with visual impairments in their planning processes. I'm proud of our work with the CCB on accessible pedestrian signal installations (a process that covered the entire twenty years I was with the Lighthouse and continues) And on the bipartisan work to establish a specialized services division within the Department of Rehabilitation which we hoped would change the face of services to persons who are blind or visually impaired by a government entity.
I think the biggest change in the level of involvement of the blind community in the LightHouse and in the change of the tone from that of professional distance to. peer involvement and investment over the past twenty years worked for a very simple reason; because I'm one of us.
What do I hope to accomplish at WID?
Being at WID as Executive Director, in an odd way, is like coming home. I worked at WID for a brief two years at its inception in 1983-84. I was out-stationed at San Francisco's Department of Social Services with the assignment of creating a work environment that incorporated people with disabilities seamlessly into the system. The goal was to create a model that could be duplicated throughout the country. We had some good success. A hiring program was adopted by the then Civil Service Commission that encouraged employment of people with disabilities. Policies based on section 504 of the Rehabilitation Act of 1973 were developed and embraced by the Department and many staff, previously unwilling to ask for reasonable accommodation or to discuss their hidden disability, found their way to my office.
The most life-changing event during this time for me was the tragedy of the AIDS epidemic where many employees of DDS died suddenly and without warning. My diversity training partner left the office on a Friday evening with a slight fever and died on Sunday. There was no treatment and no real understanding of the disease and a mentality, even in San Francisco, of deservedness.
That experience galvanized my belief that persons with disabilities are often the ones left out or left till last; that we need to be in control of our lives and that we have the right to inclusion in society at all levels.
Now, I'm back at WID. I can after all these years, balance a budget, put a solid fundraising plan in place and support the staff and board in doing the jobs for the organization they've signed on to do. But I'm really here because, as people with disabilities, we must be vigilant. We must be at the table where policy is made. We must be at the forefront of systems change. WID's agenda of social and economic inclusion will not be met unless we cause it to happen. I'm at WID to shine a light on the tremendous work WID staff has done over the years and to be the catalyst for future policy development, training and technical assistance.
Where do I see myself within the blindness movement and the disability rights movement?
For many years, I felt like someone with a foot on either side of a crevice. I began my work in 1980 with the Center for Independent Living in Berkeley, spent twenty years at the LightHouse and am now back on the cross-disability side of things.
However, somewhere along the way, I realized we really all were part of the same struggle. That even though we have disagreement in very significant areas, we also have reached agreement on many others. Sometimes our inability to work together is based on a fear of losing what one of us has to the other or of fighting over the crumbs thrown out to us rather than coalescing to the benefit of all. I guess I hope I'm a bridge and not a dam so that I'm facilitating collaboration and not blocking it.
What is the Ed Roberts Campus?
The Ed Roberts Campus is, for me, the promise of a learning culture for the disability rights movement. The seven agencies that make up the Ed Roberts Campus partnership offer a wide array of community-based, national and international direct services, education, research and advocacy programs. All track their roots to UC Berkeley's Cowell Hospital and Disabled Students Program where, in the late 1960's and 1970's, a group of people with significant disabilities--Ed Roberts among them--lived in the on-campus hospital and attended classes at UC.]
They and other people with disabilities banded together to advocate for services such as personal assistant services, independent living center services and architectural and transportation barrier removal. Much work has been done but social and economic barriers still exist between people
with disabilities and the rest of society.
The role of the Ed Roberts Campus is to keep shining the light on discrimination and inequality and serve as an open door for people with disabilities from around the world.
A Final thought?
Of some things with me you can be sure; the "blind perspective" is and will be welcome at WID. We've added two directors to our board that are visually impaired and represent blind services organizations. We respect the rights of people with specific disabilities to represent themselves and/or to be part of a cross-disability representation or both. And, ultimately, it's about being able to live your life on your terms. In that, there is no disagreement.
Today's Blind Child in School
By Winifred Downing
Joshua signifies by a hand movement that he prefers the blue sheet of paper, Jennifer shows by a vocal sound that she chooses pink, Judy uses an eye movement to select green, and Fred gets red by pressing a button on a chest strap. These are four of the seven children Ellie Lee, (a member of CCB's San Francisco Chapter) works with in an ordinary public school. All have a visual impairment of some kind but are also developmentally delayed. Some lack the ability to speak, others have limited motor capabilities, and still others suffer from paralysis in various parts of the body. To complete this task, making valentines, they use these same communications techniques to select the picture, the written words, as well as tools, such as scissors and glue.
Ellie spends two days each week with these students while also working in the regular classrooms of a boy and girl whose only disability is blindness. She is dual-credentialed, as a Teacher of the Visually Impaired and also in Orientation and Mobility.
I am an adult blind person who learned braille in the Chicago Public schools in the 1930's and 40's but realize, as I follow Ellie's teaching experiences, how vastly different is the task of urban instructors today compared with mine. When in 1976 Congress passed PL 94-142, establishing that every child must receive an education in the ordinary public school in an age appropriate classroom in the least restrictive environment, everyone associated with the education of students with disabilities was overjoyed. The unintended consequences of this measure however, have sadly diluted the instruction given to blind students.
For most of her 23-year career, Ellie has worked as an itinerant teacher-- now circulating among 14 schools. Of her 22 students this year, 3 are learning braille, one pre-school and two in the second grade. In the case of the second graders, she visits each two to three times a week, using a two-hour parking permit, purchased herself since the Board of Education refuses that assistance. Accessing her supply closet, her car, she loads her hand truck with a braille writer, SAL (a speech and learning tool), computer, braille worksheets, and a variety of manipulatives and games to reinforce the braille lesson. Once in the school building, she may be given space in the library, a conference room, the teachers' lunch room, hall way, closet or she may even move from one place to another during the hour of instruction. Often the chairs and tables wobble, and she wedges books or folded paper under to stabilize them; sometimes she must even search for the table and chair!
She creates her own braille worksheets because she can't always visit the storage facility for her students' materials during the school day. For the pre-school student, the situation is complicated by the fact that no appropriate program exists. There are many classes for pre-school children who are developmentally delayed, but nothing for visually-impaired students. Ellie is teaching her pre-schooler braille at home, but the parents have requested that she meet them at a public library, where the tables are so high, the little girl cannot get her arms up high enough to handle the braille-readiness materials. Ellie brings a blanket so they can work on the floor. The activities include squeezing balloons (some filled with flour and some with lotion) to strengthen the student's hands, and finding small objects (like coins, in a large box containing buttons, beads, and keys), which the child sorts to promote manual skills.
In urban settings, families frequently have just one parent, who works several jobs, use English as a second language, and possess little knowledge of their children's education. Only one of the braille students (one of the two second graders Ellie teaches) has the luxury of concerned parents who understand the importance of braille. After school, this student teaches his sister and parents what he has learned. His sister actually composed a braille thank-you letter to Ellie.
In her twenty-plus years of teaching, Ellie rarely has had students fully capable of learning all that braille has to offer. To children with additional handicaps, she has taught the functional use of braille. For example, she was assigned a teen-age student who was hearing impaired, blind and developmentally delayed. Though the student's previous teachers said he was unable to learn, Ellie developed a tactile communication board and labeled the classroom with functional objects having braille that correlated to the specific activity at that location. She let him feel the object and the braille label and taught him to walk independently to the place the braille symbolized. At the end of the school year, he was able to "read" the braille on his cassettes to choose his favorite music. He wasn't reading exact words but feeling the overall impression of the label.
As in this instance, Ellie has custom-designed curricula for each youngster's age and nature of the disability. The work requires heroic patience and creativity. Despite the difficulties of the teaching and learning environment, Ellie's work gives students a basic understanding of braille that will be useful as his or her education progresses. Some students continue to use large print and magnification even when their vision loss and the material to be covered signify that they should rely more on braille. For parents, the desire to stay in the sighted world is understandable but may create a psychological barrier to learning braille.
This barrier is less likely in Ellie's students because of the early foundation she provides. It will also produce students who learn more advanced braille later in their academic lives.
As competitors for the Braille Challenge, a contest often mentioned in the BC, I know of no students who come from
school systems in large cities like Chicago, Los Angeles, or San Francisco. Rather, they arrive from school systems in suburbs and small towns where property taxes produce more money for education and where the number and diversity of disadvantaged children create less strain on the schools. A better remedy for the problems for students and teachers like Ellie must be found.
Friends In Low-Tech Places
By Bonnie Rennie
People of all ages are increasingly interacting through what we used to call (not so long ago) high tech devices. Computers, certainly! But Smartphones, Facebook, and other social networking sites, any fun way to connect with others. And happily this is very much true of seniors who are blind or visually impaired.
However as the high tech bar keeps getting raised, it may be well not to forget how valuable some of our tried and true low tech friends can be. I speak today of the telephone, the landline to be exact, and of a wonderful resource we learned about at our most recent Seniors program at our CCB convention. I had originally just planned to update you readers on the Senior Center Without Walls (SCWW) program. The eligibility criteria have changed somewhat since the convention report was written. You are now eligible to join the Center, if you are over age sixty, and live anywhere in California. When I learned I could, I decided to sign up and see what it was like. And now I want to let you know what a fabulous opportunity it is to connect with a lot of terrific people and share in many interesting topics.
Amazingly, all by picking up that trusty telephone.
What is a Senior Center Without Walls, anyway? Think of a virtual senior center, such as you may be attending in your community. A plethora of groups are offered in a pleasant atmosphere, where you have the ability over time, to establish connections with fellow seniors, usually around some shared hobby or interest. But here is the difference. Instead of waiting for a bus or paratransit, or depending on someone to give you a ride there, you make yourself comfortable at home and converse via phone conference call.
We in the CCB Seniors with Vision Loss Committee have long advocated for getting yourself to a brick-and-mortar senior center and participating actively, if you are willing and able. Even doing that does not prevent you from joining SCWW on days when you wish or need to stay home.
SCWW is a small, nonprofit entity located in Oakland, CA. Like its several sister organizations around the country, SCWW capitalizes on the natural warmth and intimate communication that characterize the human voice relayed as-is via telephone. Signing up for this free service is quick and easy. When you register, you select the group or groups you wish to join. You are given a two digit code that you press to access that group. Only first names are used, so there are appropriate boundaries and basic privacy. GG-ROUP facilitators provide a balance of structure and opportunities to interact according to the group focus. This arrangement makes for a positive and pleasant experience.
Here are some examples of the wide variety of group offerings. The weekly schedule and kinds of groups offered
may change with each new semester. Groups last for 30 or 45 minutes. There are the many lighthearted subjects: sharing gardening or travel experiences, our pets, or reminiscing about the old days. Actually, participating in a reminiscing group is one good way to gain a valuable perspective on one's life, or to structure a way to teach one's grandchildren about their heritage. Then, there are many more serious, peer support groups: coping with vision loss, grief and loss, dealing with anxiety, or the challenges of aging. Mentally stimulating offerings include the daily Mind Massage, with short exercises to help us keep our minds active and in shape. The arts are well represented with numerous groups such as book club, writing workshop, poetry reading and sharing.
But perhaps the most impressive of all (and my personal favorite) is Gratitude Group. It is well known that focusing on and talking about what one is grateful for holds many benefits. After attending this group, the feeling I leave the group with each time is addictive and wonderful! It is both instructive and highly refreshing.
Senior Center Without Walls is not specifically for people with vision loss. Yet it is highly suited to our needs and strengths. Socially, the phone is truly a level playing field.
If this is something you feel might be a good thing for you, use the following contact information and check it out. Senior Center Without Walls: to register or learn more, call toll-free, 877 797-7299. Website:
www.seniorcenterwithoutwalls.org.
To read the current schedule of groups, visit link 3 on the home page.
As we rush to embrace the many and ever-changing technologies available to us, let's not forsake the social benefits of our old-fashioned friend, the phone. With apologies to country singer Garth Brooks, let us sing a rousing chorus of appreciation to our "friend in low-tech places".
